cancer – Page 15 – CHASE AWAY CANCER

The State of Chase: A Little March Madness

As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks. March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.

"Take a survivor picture of me, Mom!" — “Take a survivor picture of me, Mom!”

One of our favorite events has been visiting schools in our district for shave events. Watching children donate their hair for other children takes my breath away. There is no guile, just love and caring with the greatest commitment. The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet. I can’t blame him – I was a little terrified too. However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.”

Talking about St. Baldrick's at Madison Elementary — Talking about St. Baldrick’s at Madison Elementary

In some ways, March has really been a month about hair. We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his. It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head. We all thought he looked awesome. We all thought he knew. It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area. “I want my hair to look like Aidan’s! It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.” This was the first time Bob and I have ever heard Chase voice discontent with his differences. It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.

It was during these same weeks that I received an email from Chase’s school about hair. Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened. And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase's class about cancer life. — Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase’s class about cancer life.

Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game. I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around. He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.

It was also during this time that Chase lost a cancer friend. They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so. And that losing season brought up lots of questions for him again. One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty. Some day, I will write about this conversation, but today, I can’t. There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end. To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.

Early morning checking in on Rusty via Facebook

Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring. He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit. It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule. All of these symptoms can be normal, or they can be very not normal. Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer. We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent. And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question.

But for today, in this moment, he’s fine. In fact, I recently found him hiding under the desk in the living room with his father’s electric razor trying to give himself an even more bald head. So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…

…moment by moment.

The Story of Three Guys

Once upon a summer time in a city of two towers, three guys named Tim, John, and Enda did well for themselves and decided to give back. But how?

They decided to shave their heads for donations to fund research for kids with cancer and the next annual St. Patrick’s Day party was the perfect time to do it.

March 17, 2000. 17 heads. $17,000. This was the plan and the goal.

They proceeded and instead of reaching their goal, they’d exceed it significantly! Instead of the 17 and 17,000, they’d end up with 19 shaved heads and $104,000.

The party was so successful that they did it again the following year and raised $140,000.

And then the Fall came and the two towers fell in their city and lives and friends were lost in that city, yet the men moved on unshaken in their goal for children.

The next year had 37 events…not 37 heads, but events, and they reached their first $1 million.

Many who shaved were the first responders… the men and women who ran to rescue at the two towers, who run to rescue every day, the men and women who answer the panicked parent calls for the bald cancer children, the men and women who faithfully serve the country… They shaved their heads and stood for kids with cancer on military bases. This is heart and soul worked out with a razor. This takes the hard and sad markings of a disease and turns it from a sign of “other” to one of greatest courage and cause.

These men with this March idea would go on to become an independent foundation and begin funding Fellows – researchers who worked to better treatments and change the future for kids with disease. More fellows and researchers every year. More ideas.

The shaving events continued to grow into the hundreds and the dollars into the tens of millions and the most respected in the nation gathered for a research summit to discuss priorities and goals and quality of life for the littles and in 2012, as the ambulance rushed us in and we heard “There’s a large mass…” and our lives changed forever, this now national foundation, named for the marriage of the worlds “bald” and “St. Patrick’s”, this huge thing born of an idea to give back, it reached $100 million.

And then it gave back as it did every year…this time, the fellows included a young doctor in Chicago who was about to meet Chase and fight for his life. And it became personal.

Each year, the foundation chooses 5 children to be their face and story. Four living and one forever in our hearts – to represent the current truth of the fight that 1 in 5 will not survive. Some of them shave, and some of them can’t…because they have no hair to share. But they all step forward, look the cameras and the papers and the people right in the eyes and say “This is me. This is who I am because of research and the need of it.” Sometimes, the picture painted isn’t pretty, but the children are always beautiful in their struggle and their open hearts.

And so, when your social media blows up in March with donation requests, invitations, and people in bars and on stages, covered in green aprons and crying and shaving and holding loved one’s pictures and hands… This is why. Because almost two decades ago, three guys had an idea.

Around the world, a child is diagnosed with cancer every three minutes. This is our March, our year, and on some level… our life. We invite you to come with us.

I want to help, but I don’t want to shave my head.

I want to shave my head.

I want to learn more about St. Baldrick’s advocacy in Washington.

Why do they focus on pediatric cancer?

[All St. Baldrick’s history courtesy of the St. Baldrick’s website. To read more, click here.]

Good

The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”

Let it sink in… Good news. The very best we could have hoped for! These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects. What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief. Oh, but what relief…

In pre-op preparing for the scan: when the medicine works, it works quickly...one minute, up and playing, the next like this... — In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…

And Chase? He’s so funny… his hardest part was done yesterday when he woke up in post-op. The needle was removed and he could eat and that was it. And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along. This boy, he takes it as it comes. And so will we. Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.

Good news… The very best we could have hoped for…

Moment by moment.

“This is the Lord‘s doing; it is marvelous in our eyes. This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:23-24

Chase with Nurse Jo in post-op after his scan

Chase On His MRI [VIDEO]

The sun is only hinting pink when I feel another presence on the edge of the living room. This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.

Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fight cancer. What’s your superpower?”, he jumps onto the couch and snuggles close. His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.

The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?… They come with heartbreaking regularity and the answers are always the same. In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.

In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink. They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.

You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not. My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good. Always.

So today, hear Chase. He’s about 24 hours away from a big MRI and he’s scared. He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure. This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it. He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.

Moment by moment.

*Note: His last words are “I want Mrs. Schneider to pray for me.” That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day. Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI.

The Story of 2014

Once there was a family of six: a handsome father, a redhead mother, a sole princess girl, and three little wrestling and running boys.

The handsome father, he worked in two places – one a large company, the other a church. In both places, he worked with numbers… lots and lots of numbers. In the free moments, you would find him completing a half marathon, quiet with a book, or very lately, working in his new garage.

The redhead mother spent the days holding the pieces together… pieces of laundry and food and school and sometimes, yes sometimes, even silence.

The sole princess girl, just a second ago a babe in arms, was suddenly eight and tall, and already a fast runner. She was never so happy as when she was running… just like her father.

The oldest of the wrestling boys was five, nearly six, and started wearing glasses to see, which made him look wise. He began the school journey and stretched his legs at running to try and beat his sister, and if he could, would choose to be buried under a gigantic mound of Legos forever.

The middle boy, with his lightning scar and white head, also began his school journey, but with special help and the fulfillment of his special wish… to ride a bus. He continued, at every turn, to live up to his name and found his way through life in a never-stopping, never-settling way.

The baby boy, a baby no more, stood nearly as tall as the middle boy, with wide shoulders and stance that spoke of having older brothers and being ready and willing to throw the first punch. And yet, he would sit quietly with a book for the longest time and everywhere he went, he looked for horses.

This family of six were wanderers. They left their tiny space when the word “cancer” was first spoken and lived with grandparents for help as two years came and went. They decided to sell their tiny space and pray for more room close to everything held dear, and the tiny space almost sold three times and they prayed for wisdom to know… and then the tiny space, their first little home, sold and they were led to the perfect little blue house near everything held dear and so, wanderers no more, they moved and settled in the early Fall as the leaves began to change.

And in the first hours of owning the little blue house, the call came that something was growing again under the lightning scar in the white head… and the family stopped and prayed for moment-by-moment grace to find the joy in the every day as they waited six weeks and checked again, and then six more and again.

And by the time this story rests in your hands, another check will have come and gone and a course of action will stand in front of the family. But they put aside the fear and in grace, choose faith and yes, even joy for their family and their boy, and the root of it is found in this season and in another little boy, born thousands of years earlier. This stable-born boy would grow to be the Savior and Lord and, bloodied arms stretched wide, would triumph over sin forever and ever, and make a way for death to have no victory or sting, and in this boy-turned-forever-King, there was and is hope and joy, and in this the family of six, in their little blue house, rests secure. They hope and pray the same for you.

[This is the text of the Ewoldt Family Christmas letter that was mailed in early December, 2014 – Thank you for walking this year with us…moment by moment.]